Born with a rare chromosomal disorder, 6-year-old Lydia Schaeffer suffers from life-threatening seizures that doctors haven’t been able to control despite countless medications. In marijuana, the family thinks they might have found a treatment that works. Now, they are trying to help legalize the drug.

Caption

Born with a rare chromosomal disorder, 6-year-old Lydia Schaeffer suffers from life-threatening seizures that doctors haven’t been able to control despite countless medications. In marijuana, Lydia’s family members think they might have found a treatment that works. Now, they are trying to help legalize the drug.

Feb. 23, 2014Sally Schaeffer plays with her daughter Lydia, who suffers from life-threatening seizures, at their home in Burlington, Wis. Parents of children suffering from seizure disorders are fighting for access to marijuana, and they have changing public attitudes on their side. For the first time, a majority of Americans in opinion polls say they support the full legalization of the drug.Darren Hauck/For The Washington Post

Standing in a Wisconsin State Capitol hearing room surrounded by parents hugging their seriously ill children, Sally Schaeffer began to cry as she talked about her daughter.

Born with a rare chromosomal disorder, 6-year-old Lydia suffers from life-threatening seizures that doctors haven’t been able to control despite countless medications. The family’s last hope: medical marijuana.

Schaeffer, 39, didn’t just ask lawmakers to legalize the drug. She begged.

“If it was your child and you didn’t have options, what would you do?” she said during her testimony in Madison on Feb. 12.

The representatives were so moved that they introduced a bipartisan bill to allow parents in situations similar to Schaeffer’s to use the drug on their children.

For some families with children who suffer from rare seizure disorders, a new form of medical marijuana is proving to be a life-changing treatment. (Gabriel Silverman/The Washington Post)

Emboldened by stories circulated through Facebook, Twitter and the news media about children with seizure disorders who have been successfully treated with a special oil extract made from cannabis plants, mothers have become the new face of the medical marijuana movement.

Similar scenes have been playing out in recent weeks in other states where medical marijuana remains illegal: Oklahoma, Florida, Georgia, Utah, New York, North Carolina, Alabama, Kentucky.

The “mommy lobby” has been successful at opening the doors to legalizing marijuana — if only a crack, in some places — where others have failed. In the 1970s and ’80s, mothers were on the other side of the issue, successfully fending off efforts to decriminalize marijuana with heartbreaking stories about how their teenage children’s lives unraveled when they began to use the drug.

Mothers have long been among the most powerful constituent groups in the United States, and the reason is clear. Groups such as Mothers Against Drunk Driving are able to draw so much public support because they tug at a universal human emotion: the desire to protect children from harm. And while national gun-control efforts after the Sandy Hook massacre faltered, mothers’ groups worked to keep the issue on the public radar, helping to get some new measures passed at the state level.

Today, mothers are fighting for access to the drug, and they have changing public attitudes on their side. For the first time, a majority of Americans in opinion polls say they support the full legalization of marijuana.

Last year, Colorado and Washington state made marijuana fully legal, and there has been a groundswell of support in several states for ballot initiatives or legislation to do the same, including some in the conservative South.

Medical marijuana is now legal in 20 states and the District of Columbia. The diseases and conditions for which it can legally be used are limited and vary by jurisdiction. Most states have additional requirements for children: Instead of one prescription, parents must get two from different doctors.

Even in states where marijuana is available for children, the mothers say it is often a challenge to convince physicians that the potential benefits outweigh the risks.

The drug the mothers are seeking is an extract that contains only trace amounts of the part of the plant responsible for the euphoric effect of the drug but is still high in cannabidiol, or CBD — a substance that scientists think may quiet the electrical and chemical activity in the brain that causes seizures. Instead of leaves that are smoked, it is a liquid that is mixed in food or given to a child with a dropper.

The prospect of treating large numbers of children with this substance has alarmed medical organizations and anti-drug groups that say the potential dangers of prescribing an untested and unregulated treatment for young children are being lost in the conversation.

Little is known about the effects of marijuana on children; most studies have looked at teenagers who use it illicitly.

Much of the concern centers on the developing brain: Marijuana use has been linked to higher rates of mental illness, including thought disorders, depression and anxiety, as well as — according to one prominent study published last year — diminished IQ over time.

“There’s a lot of misinformation and emotion in this issue, rather than a focus on science,” said Kevin Sabet, an outspoken opponent of marijuana legalization who is director of the Drug Policy Institute at the University of Florida and was a former senior adviser for drug policy in the Obama administration.

The epilepsy community is divided on the issue. The Epilepsy Foundation, which represents patients and their families, said in late February that it backs efforts to legalize medical marijuana for use in pediatric epilepsy patients. But the American Epilepsy Society, which represents physicians and other professionals working in the field of epilepsy, says the treatment “may not be advisable due to lack of information on safety and efficacy.”

Sharon Levy, an assistant professor of pediatrics at Harvard Medical School and chair of the American Academy of Pediatrics committee on substance abuse, said she’s a strong proponent of studying and developing medications from the active ingredients in marijuana. But she does not support the idea of parents choosing the plant they think would be best, making their own oral preparations and guessing at proper dosage without knowing long-term side effects.

“It is a bad idea. When I look at the accumulation of studies about marijuana and children, I am very concerned,” she said.

Levy said she understands that efforts to develop and test marijuana-­based treatments for the disorder may not be moving fast enough for some children with severe epilepsy. But she said that the fact that there are flaws with the regulatory system means that we should fix the system rather than bypass it.

“We shouldn’t forget that the regulatory system was put in place for a reason,” Levy said. “The history of medicine is littered with stories of ‘medications’ that had terrible long-term impacts.”

Charlotte’s story

Stories about the promise of marijuana for seizures have been circulating as far back as the 19th century, but it wasn’t until two years ago, when Paige Figi, a Colorado mom, began posting online stories about her child’s experiences with the treatment, that other families began to take notice.

Of the 2.3 million Americans living with epilepsy, more than 1 million of them have seizures that can’t be controlled by modern medicine. Figi’s daughter, Charlotte, was one of them.

Diagnosed with a rare condition called the condition known as Dravet syndrome, Charlotte, then 5, was suffering from more than 300 seizures each week. She used a wheelchair, could only say a few words and had gone into cardiac arrest more than once. Desperate after doctors told them there was nothing more they could do, Figi and her husband, Matt, turned to medical marijuana.

They began to give Charlotte a few drops of an extract made from a strain of marijuana that was high in CBD, which is thought to be medicinal, and low in THC, the component that creates a high, twice a day with her food. They were surprised when the seizures nearly stopped.

As Charlotte’s miraculous story spread, more than 100 families relocated to Colorado Springs, where the dispensary selling the substance is located. Across the country, parents are holding bake sales, benefit concerts and other fundraisers to try to raise money for the treatment; it can cost several hundred dollars a month to purchase the extract. A nonprofit foundation formed to assist those seeking the drug said that 187 pediatric patients are being treated and that there is a waiting list of more than 3,000.

Figi and Joshua Stanley, the grower who co-created the strain that is being used in the treatment — now known as “Charlotte’s Web” — have become heroes in the epilepsy community.

At the invitation of mothers, Figi and Stanley have been traveling around the country, telling Charlotte’s story to lawmakers in other states.

“It’s very emotional,” Figi said of the hearings. “Everyone’s handing out tissues — especially when someone comes who has lost a child to seizures, and they are coming out to support this effort.”

Stanley, 38, recently started Strains of Hope, a nonprofit organization that is dedicated to trying to get governments around the world to legalize the use of marijuana for medical purposes. As a first step, he said he is working with partners in Jamaica, where he hopes the extract could be available for free to children who need it as soon as the end of this year.

“Children should not be dying because of these antiquated laws,” he said.

But beyond all the heartbreak and hope lies the question of whether the treatment works. And if so, how?

Stanley declined to release any detailed numbers about how effective the treatment has been, but he said nearly every child with epilepsy who took the extract experienced a reduction in seizures.

There is some medical support for such a claim. There are several thousand published studies showing the potential benefits of marijuana for some conditions, and animal studies have shown that using CBD can stop seizures. Marijuana is made up of hundreds of components, with about 80 classified as cannabinoids unique to the plant, which scientists think activate specific receptors in the brain and other parts of the body to produce physiological and behavioral effects.

Heather Jackson, executive director of Realm of Caring, a foundation that is dedicated to research, education and advocacy for Charlotte’s Web and other marijuana-derived medicines, said the organization has begun to communicate with partners about the possibility of starting clinical trials for the treatment.

“We know that, in order for the treatment to be accepted by the medical community, there has be more testing, but because it’s marijuana, there has been a lot of red tape,” she said.

GW Pharmaceuticals, a British company, received FDA approval in December to begin clinical trials of a medicinal form of marijuana for children with epilepsy at New York University’s Langone Medical Center, the University of California at San Francisco and other locations.

But the trials are limited, and many mothers said they tried to enroll but were told the trials were full.

Proposals for the future

One of the first things Schaeffer told lawmakers when she stepped up to the podium in the hearing room in Madison was that she had never smoked marijuana. She wanted to make it clear that she wasn’t part of a more radical movement that aims to legalize recreational marijuana.

Like many of the mothers involved, Schaeffer said she supports legalizing medical marijuana for everyone but would be happy with a narrow law that authorizes the use of a specific kind of marijuana treatment for children.

Schaeffer’s daughter, Lydia, has a rare form of epilepsy that makes her have seizures when she sleeps. Doctors have told the family that the only treatment option is a surgical procedure that would remove part of her brain. They warned Schaeffer and her husband that such a treatment might end up leaving her more disabled — the surgery could blind her, for instance. Moving the whole family outside Wisconsin to a state where medical marijuana is legal is not an option, they said, because they own a small landscaping business in Burlington and Sally Schaeffer’s parents live nearby.

She said that if the bill does not go through this session, she may move to Colorado with her daughter and her husband may have to stay behind with their two sons.

“If I have to wait, I worry, what if my child doesn’t make it? It is heartbreaking to think of losing your child from a seizure when you know the medication is out there that could help them,” Schaeffer said.

Wisconsin state assembly member David Murphy, a Republican, said he signed on to be a co-sponsor of the bill after hearing about the mothers’ plight.

“I am not in support of legalizing marijuana and have not supported medical marijuana up to this point, but common sense tells me this is not remotely the same thing as that,” Murphy said.

While the mothers have received almost universal sympathy wherever they go, the proposed solutions to their problems differ by state.

In Wisconsin, the state committee on children and families passed a bill last week to allow the use of CBD oil in the treatment of seizure disorders. In Utah, state lawmakers have talked about importing the extract from Colorado and having the health department administer it as an herbal supplement.

In New York, Gov. Andrew M. Cuomo (D) has proposed a plan to use existing law to allow 20 hospitals to dispense the drug.

None of these are permanent solutions, the mothers say.

Even those who live in one of the states that allow medical marijuana say there is a need for change.

The main issue is that many parents think that only certain strains or formulations may work for their children, and, because marijuana is classified as a controlled substance, they can’t move the drugs across state lines — limiting not only their treatment options but medical research.

“This is not how medical care is supposed to work in the United States. You shouldn’t have to watch your child suffering and be told you can’t have the medicine that can help because you live in the wrong state,” said Colleen Stice, 35, a former payroll manager in Tulsa who quit her job to take care of her 14-month-old son, Rowan, after he began to have seizures.

She said she and her husband are ready to move to Colorado if legislation is not approved in Oklahoma, but she worries about what might happen if a different drug that works better is developed in another state. Would they pick up and move again?

The only answer to this patchwork system of access to medical marijuana treatments, the mothers say, is federal intervention.

They are asking the FDA to speed up the approval process for drugs based on CBD, requesting that the National Institutes of Health dedicate more money to this type of research and urging the Drug Enforcement Administration to reclassify marijuana so that it can be moved around more easily.

This month, the mothers will bring their fight to Washington. Dozens are planning to fly in from across the country to meet with key legislators on Capitol Hill and hold a march across the city. They plan to bring their children.

Comments our editors find particularly useful or relevant are displayed in Top Comments, as are comments by users with these badges: . Replies to those posts appear here, as well as posts by staff writers.

To pause and restart automatic updates, click "Live" or "Paused". If paused, you'll be notified of the number of additional comments that have come in.

Comments our editors find particularly useful or relevant are displayed in Top Comments, as are comments by users with these badges: . Replies to those posts appear here, as well as posts by staff writers.